Result card

  • SOC7: How do patients perceive the information they receive or require about Abdominal Aorta Aneurysm Screening?
English
No adaptation help available for this domain

How do patients perceive the information they receive or require about Abdominal Aorta Aneurysm Screening?

Authors: Lotte Groth Jensen, Claus Loevschall, Anne Lee

Internal reviewers: Felix Gurtner, Allessandra Lo Scalzo

According to a survey, patient information used in AAA screening varies {Available as separate file filename.extenson}.

Risk communication in relation to operating for AAA might be particularly difficult due to uncertainty related to outcomes and a choice between two procedures with distinct risk profiles. Whether or not to undertake a problematic prophylactic intervention for an asymptomatic condition is particularly difficult for the elderly, who are at the highest risk of post-operative morbidity and yet have the least potential for long-term survival {28}.

In-depth interviews with patients who had undergone AAA repair identified four central themes: i) patients did not appreciate the scope of their options in relation to surgery ii) patients were not adequately informed prior to decision making iii) patients differed in the scope and content of information they desired iv) trust in the surgeon had an impact on the informed consent process. The study showed limitations in current practice in relation to the informed consent encounter suggesting that the information should go beyond the disclosure of risk, benefits and alternatives. It seems critical to adapt the informed consent encounter to incorporate the patient’s perspective in order to ensure that the decision about AAA repair is consistent with the patient’s informed preference {27}.

Interviewing patients 1 month after AAA repair showed that patients felt ill-prepared for decision making and for potentially distressing situations after surgery. When advised to undergo surgery they felt they had no choice and simply had to go with the flow {24}. Other studies pointed to a need for individualised detailed and specific information before and after operation {2,29}.

While surgeons agree on the need to provide risk information there is no agreement on what constitutes effective risk communication {30}. A study showed that mortality was the one risk that the majority of surgeons agreed should be included in informed consent for AAA repair. There were substantial variations in opinion among surgeons about which risks should be included and which complication rates should be quoted. Further efforts are needed to establish informed consent guidelines, which could be accomplished by a panel consisting, not only of vascular surgeons, but also patients and legal experts {28}.

A study explored the information provided to patients with AAA by analysing 35 consultations involving 11 surgeons. The consultations included 13 patients with small AAA (<5.5 cm) and 22 patients with large AAA (≥5.5 cm). Of the consultations with patients with small AAA 8% covered the characteristics of the disorder, the procedure and the aim of therapy, the consequences and risks of the procedure, alternative treatment options and individual prognosis. These aspects were covered for 41% of the consultations with patients with large AAAs. In 31% and 18% of the consultations, respectively, the patient’s preference was explored {31}.

Four studies of how best to inform patients were identified. In one study people who had previously undergone AAA surgery were presented with different formats of risk information and asked to choose between two different treatment options (surgery vs. observation). In general the information was seen as helpful though all formats had drawbacks. Patients with a greater desire to be involved in decision-making preferred more, and more complex, information compared with patients who wanted to be less involved, suggesting that the choice of risk format might be more important for patients wanting to be less involved in decision-making {30}. In another study patients receiving an individualised brochure felt they had a better understanding of issues important for treatment decisions and had prepared more questions for the second consultation {32}.

A study showed a computer-based decision support tool, tailored to the patient’s treatment options, co-morbidities and functional status, to be feasible and well accepted {33}.

The Guideline from the American Society for Vascular Surgery states that there is a need to develop optimal methods for invitation to AAA screening and to determine how best to provide risk-benefit information for individuals offered screening {34}.

Examples of patient information for AAA screening are available at: http://aaa.screening.nhs.uk/leaflet and at http://www.uptodate.com/contents/patient-information-abdominal-aortic-aneurysm and http://www.vascularweb.org/vascularhealth/Pages/Patient-Success-Stories.aspx

Critical
Partially
Jensen L et al. Result Card SOC7 In: Jensen L et al. Social aspects In: Jefferson T, Vicari N, Frønsdal K [eds.]. Abdominal Aorta Aneurysm Screening [Core HTA], Agenzia nationale per i servizi sanitari regionali (age.na.s), Italy; 2013. [cited 30 June 2022]. Available from: http://corehta.info/ViewCover.aspx?id=106

References